Still hoping for a career in spite of living with chronic pain and fibromyalgia

Some days it can be difficult to reflect on the career losses of living with chronic pain. I look around at friends and family members with dreams of accomplishment and the ability to carry it out. As a young child I dreamed of being a psychologist and a writer. I wanted to make a difference in the lives of people who were suffering. As I grew older my dreams became more sophisticated and branched out to potential paths yet the heart of it remained. I love counseling and coaching people and enjoy the healing power of writing. Friends have commented regularly on my insights into living and wisdom to sort through complicated situations whether in writing or in regular conversations. I also love doing research, strategizing and developing systems that can aid a group of people.

When looking ahead, I still see many barriers. I read through Craigslist and am drawn to many career opportunities in social work, strategic planning, the legal field, research, writing and social media. When I read through the details it can be difficult to imagine myself in a structured job that doesn’t allow flexibility for my bad days. Add in commute and preparation time and my energy level can be drastically reduced. During my work days I found I could work roughly 15 hours a week, but it still made life outside of work challenging. When most of my energy went into work, it left a lot less for my family and responsibilities at home.

I still have hope that a new career path will open up for me. Writing and consulting can have the flexibility I need, yet allow me to contribute to others. Perhaps there could be a way for me to return to school for a masters or doctors degree in counseling. This is also a job I could do part time, though internships could be challenging. My experience with chronic pain in both these categories would be helpful. As much as I enjoy my current life, I miss the value, the people, the stimulation and the growth that comes from having a career. I will continue to make the most of my daily life in spite of my pain, yet keep the dream alive for something more.

Why use 12 steps for chronic pain recovery? It doesn’t seem to make sense that I would compare addiction to dealing with chronic pain. Addiction seems to be self induced, self focused, obsessive, and destructive. We often see a visualization of a drunk homeless man begging for “food” that would go towards alcohol. We imagine the loved ones we knew who lied, stole, and rationalized their habit, while making everyone around them suffer.

The Medical Dictionary defines addiction “as a habitual psychological and physiological dependence on a substance or practice beyond one’s voluntary control.”* It doesn’t mean that a person can’t always control the use of the drug/behavior, but they continue to use more or more often of the drug/behavior in spite of consequences and/or a desire to stop. They often are compulsive and use the drug/behavior regularly as a way to cope with life’s demands.

Chronic pain has similarities with addiction. It is something that is beyond our control, can be all consuming and can drive us to do things we hadn’t thought about before. A person with an addiction will seek more and more for greater high, and a chronic pain sufferer may seek more and more for greater pain relief. We tend to have shame, may isolate, feel alone in our experience, and may focus on pain relief as the cure to all things being good again. Our thoughts and emotions can contribute to our addictive and pain tendencies and the intensity in which we experience them. Most people experience addiction tendencies and most people experience pain in their life time – the degree in which we experience them is what may make us feel unique. There are consequences with chronic pain, and it requires a mind changing (and possibly spiritual) experience to make us whole again even if we still have the physical pain. People with addictions have to learn how to live in the world in spite of cravings and/or giving up something that initially brought relief. Outsiders may look down on chronic pain sufferers as they would with people with addiction, wondering what they did to create such hardships and why they can’t make themselves well again. Those with chronic pain and addictions do not cause themselves to be this way. Certain actions, genetics, experiences and behaviors might have contributed to their vulnerability, but few would volunteer for this path.

Chronic pain in itself is not an addiction accept in cases of self induced pain like cutting. Though our body adapts to the pain we experience we do not need more pain or less in order to function. People are generally not drawn to seeking pain, and we can’t make the choice of whether we will have pain. We don’t create the habit or the compulsive activity, the pain found us. Those who take pain medication are also not automatically people with addictions. Though some of the patterns and physical need might be similar, they don’t necessarily develop the compulsion or obsession of the drug to give complete relief.

When we begin to go from a person experiencing pain to a chronic pain sufferer, something changes within us. Many people are drawn to various addictions to escape the pain, or pain relief methods gradually become addiction. We can feel discouraged because we cannot control our pain or make it go away. Often we find ourselves searching for understanding, evaluating our values and priorities and looking for something to hold on to. Looking at the 12 steps offers a way to surrender to something greater and bring inner wholeness to guide us in the path ahead. By looking into our past, our relationships, our hurts and our harms, we are able better to cope with the times of solitude and bring greater peace into our lives. I believe the 12 steps can be used as a tool for greater awareness, joy and spiritual growth, in helping chronic pain sufferers have a more fulfilled life. The 12 steps are not the only solution, the only path, or perfect in their origin. Yet, as a person with chronic pain, it has offered me hope, wisdom, light and greater purpose for the journey.

We admitted we were powerless over our chronic pain—that our lives had become difficult to manage.

I have always found value in the 12 steps of Alcoholics Anonymous and many of their recovery philosophies. There have been many situations in my own life where I found that my will and effort alone could not fix a problem. The harder I tried, the less effective it might be. Much of these situations had to do with my desire to stay strong and independent and not take the risk of being vulnerable to other people. I really believed that I could make things better if I did the right research, had the right attitude and gave the right effort. Unfortunately this isn’t always the case. In some situations and circumstances an addictive element would take over causing me to be more self-absorbed and caught in destructive patterns of behavior. In these situations it was vital that I learn to surrender and open myself up to the guidance of my spiritual source and other people.

When I first experienced severe chronic pain and fibromyalgia symptoms my life was no longer manageable in the way I was used to. I found it was difficult to complete daily tasks, care for my children, and deal with the daily pain that would not escape me. I searched for ways to eliminate and understand my pain, yet nothing worked in the way I thought I needed. The people around me had a variation of reactions to my new pain, from excessive advice, demands for specific types of treatment, and ignoring my reality to those who offered both love and practical help. I could no longer nurture my relationships in the same way and they too seemed unmanageable.

The difficult thing with the word “powerless” is that I still have power in some areas, while other things are beyond my control. I did not choose to have chronic pain enter my world and my will alone won’t make it go away. I am powerless over waking up at night with pain, having pain spasm when I sit, the pins and needles, the fatigue, or the more intense pain I experience in my back and knees. I am also limited in that I don’t know all things, what the cause of my pain is, and what specifically could make it end (if there is a cure). Even if I did all the research in the world, I would never completely know everything about how my body works. Fortunately I do have options of experimenting with medications, activities and adaptations that might lessen my pain. I can choose to prioritize my activities, continue self-healing (physical, mental, spiritual), find joy in the moment and give to those around me in spite of my pain. My attitude and ways of coping will always be something within my power. I can choose to open up to a new way of living, that brings me down a better path than I imagined.

The beauty of recovery is that the principles will carry you forward even though the addiction/chronic pain is still a part of you. As with addiction, I cannot live the same way I did before, as this way of living will lead me into darkness. If I keep searching for what was, compare myself to those who seem to have it better and try to live the old way, my life will be unmanageable. Though I will pray for complete physical healing, I believe I am receiving greater spiritual and mental healing than I could have imagined. My pain creates a sense of vulnerability, humility and need that opens me up to something greater than myself. Recognizing my powerlessness was the first step, the beginning of something more.

I am learning a great deal about disability. Though I can classify myself as disabled, I have never thought of myself this way. The term in itself implies limitation and little hope. Synonyms for disability include: disqualification, incompetence, incapability, lack of power or ability. There is even a definition that is specific to work. Random House Dictionary includes a definition of “a physical or mental handicap, esp. one that prevents a person from living a full, normal life or from holding a gainful job”.

In general, I prefer to reflect on the statutory definition of disability. Statutory Definition — With respect to an individual, the term “disability” means

(A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;

(B) a record of such an impairment; or

(C) being regarded as having such an impairment.

I like the focus on the impact on activities verses implying that someone with a “disability” can’t live a normal life. I would prefer the word “impairment” be changed to condition, because many “impairments” also come with strengths that may be less measurable. Unfortunately we also fail to note that some of these “impairments” can have less impact on someone’s life activities with simple modifications.

The best way I can describe myself is that I have been regenerated. I believe that my condition has moved me to” re-create, reconstitute, and, make over, esp. in a better form or condition.” The pain I feel in my body brings me a greater awareness of my physical and mental state. Because stress increases my pain level, I am more committed to addressing problems and maintaining a positive attitude. Because I struggle with fatigue, I have made adaptations to my schedule. I have more down time to spend with my family, and constantly evaluate my values and priorities so I can focus on what is most important. As a person I am much more compassionate, humble and understanding of the challenges people with limitations face. I also have learned new survival skills, medical terminology, and assessment techniques.

When I make adaptations to my life, I notice less the negative impact of my physical condition. Because I have extreme pain back and have periodic pain spasms, sitting can be difficult. At home, I encounter the intense pain less, as I sit on my couch to type. During meetings or in the office, I am still searching to find a comfortable working chair and ways to keep this more manageable. When dealing with my fatigue, I find that it is best to tackle the detailed activities during my prime time, as I need to be able to focus. When I feel more tired, it helps to focus more on my natural abilities like talking to people or doing routine tasks.

Because my symptoms are less visible, many people are not aware of my physical challenges. Disclosure is a balance not easily understood. For me it has less to do with rights, and more to do with support and my motivations for disclosure. It is important that I have people around whom I can talk to in both the work and personal environments. In situations where I am doing a task, or have less personal contact it is less significant to fulfilling my role. I choose to live with a degree of potential misunderstanding instead of making my condition part of the equation. I seek to remember that those around me may also have limitations that I am unaware of.

I am grateful that I have had opportunities to explore my vocational interests through volunteer and work experiences. It isn’t easy, and has required a great deal of flexibility and personal growth through some tough challenges. I keep in mind my own values, and keep pressing ahead. It may not always turn out the way I want or expect, yet, it is always enriching if I allow it to be.

What happens when disclosure goes wrong? When I started my disclosure series, I didn’t anticipate including an article regarding discrimination in the workplace. With all the protection and awareness regarding equal rights, one wishes to be hopeful that discrimination is a rare event. Unfortunately though, when there is disclosure or an apparent disability discrimination happens. It can be difficult to determine whether this different treatment is something that qualifies as discrimination.

Laws are put into place to protect employers and employees. It is always important to understand the local and federal laws and guidelines when you have a disability. It is also helpful to understand your company policies and/or other contracts in the workplace. If you need clarification on policies, it is important to ask your human resources representative (ideally in writing) and document whenever possible. Many people may need greater understanding of the laws, and will want to consult a lawyer and/or the civil department to have a better grasp on its impact for them as a person with a disability or for the employer who hires them.

Communication is always key to solving problems and another means of protection for everyone. It can be difficult to know whether asking questions or stating complaints can be helpful or hurtful when dealing with working relationships. In a larger company, a human resources employee can answer questions and it probably won’t affect the working relationship. In a smaller company, the person dealing with human resources may be your boss or co-worker, and questions may create conflict for the person with a disability. An employer might feel accused and deny or rationalize any wrong doing without even taking the time to listen to the complaint. Often times, people do things that might look like discrimination, but it is more related to lack of information, discomfort, lack of interest, or something else entirely. Most people do not want to cause others harm, and often a conversation can make people change. Unfortunately for some, a conversation may just make things worse, and result in a power struggle or they will attempt to help, but don’t follow through or change their behaviors. As an employer, it is very important that you take their complaints seriously and consult others for input. Keeping records of such statements can be helpful for everyone if a formal complaint is made at a later date.

Feeling like you are discriminated against can be difficult emotionally and physically. It is always helpful to have outside support and people to process with that you can trust. This may be a family member, a counselor, a lawyer, a support group, and/or a friend. Often we can sense things that are going on, but may not be able to quite articulate if it is actual discrimination or whether we want to address it. Many people, on some level, will have an emotional reaction to someone with a disability, and this is easy to sense when it is aimed in your direction. Learning how to react to this can help build bridges. However, when their biases result in different treatment that causes harm, more specific communication is generally needed. If communication doesn’t work you may want to take other actions. This could be filing a complaint, seeing a lawyer, look for a new job, observing and documenting, or some other option. Having people around to help you see your options and validate your experience can help ensure you make the best choices that work for you.

Being accused of discrimination is difficult for an employer. A lawsuit of discrimination would hurt a company’s reputation and cause financial harm. The supervisor might lose their job and/or have to go through an extensive evaluation of their actions. Taking the time to work through the issues, whenever possible, is always advised. Most people want to be treated well, and legal action is generally done when nothing else works. It is helpful to understand clearly what the person is looking for, and how specifically you can make it better. This may require listening to a lot of venting, and probing gently for clarification on what can be done. If needed, a mediator or human resources personnel might mediate to give a different perspective. It can be useful to have someone they trust sit in as well, to aid in reaching an agreement and/or understanding. Consulting with others to receive legal and general feedback can give guidance on questions to ask, and assist in processing through the employer’s own emotions. It is ok to have conflicts with a person who has a disability, but important that the same protocol is followed as is done with other employees.

Discrimination can diminish if we all choose to look more intently at the subject of discrimination. When we take the time to see how we treat certain people differently, we are on the path to making changes. All of us have biases that impact what we do. Ignoring these biases, however, can cause great harm especially when we act upon them continuously. The best way to change our own biases is to talk about them and confront them directly. Often this involves spending time with the people we are most afraid of, and learning to treat each person as an individual. Even in the most challenging cases, we always grow from these experiences as we choose to turn towards something better. With greater awareness, we can proactively make our work environments more satisfactory, where we embrace our fellow man and see the unique strengths we each bring.

I have written a general letter to an employer considering hiring someone with a disability and/or with chronic pain. This letter is expressing my ideal work environment and what it is I need and desire from an employer. Every individual is different, so I can’t generalize to others, yet it can be a great starting point for understanding and thinking about accommodations and support in the work place. My letter is addressed to a potential employer, as this is the beginning of the employment relationship and where the self advocating begins.

Dear potential employer,

Please consider me for employment opportunities in your company. I have many skills and experiences in which I can contribute to make your company a success. I also have chronic pain, fatigue and some ADD traits. Even though my health conditions require some adaptations, they have contributed to making me the strong person I have become. I am clearer about my priorities and values, I think outside of the box, I know how to work with others, I am persistent, have integrity and can see the silver lining in the most difficult situations.

Hiring someone with a disability will make you and your company better. I have met many people with various disabilities when I worked as a vocational consultant, and every one of them has changed me in some way. I have been inspired by the positive attitude, the ability to overcome obstacles, the self evaluation, the willingness to ask for help, and the humbleness of many. I have learned to be clearer in my statements, to slow down, to change my perceptions about certain disabilities, to ask others if they want my help (not assume they do), and to listen so I can receive a clearer picture of their life. I have also seen how difficult it can be for some people to find a sense of value and worth in the middle of such difficulty, and how many doors were shut down because they didn’t fit into our expectations of “normal”.

The structure you set up that will be effective in drawing out my strengths, will also contribute to greater relationships with others. Writing out instructions is helpful for me to be clear on what is needed, and develops procedures in the office. Regular meeting times helps me feel supported and allows time for constructive feedback. Working together we can see problems and visions from a different viewpoint making us more creative.

The greatest thing an employer can do is to learn about the specific individuals needs in regards to their disability. Asking questions to understand how I am doing and what I need creates a supportive environment. Because of privacy issues, it can be helpful for the supervisor to ask whether I would like to talk about the impact of my disability in the work place and if I wish to be the one to bring it up or to set up meetings periodically to discuss this. Many employers believe they are being supportive by treating them like everyone else, or ignoring the issue. However, for some individuals this can feel like the elephant in the room, and problems may not be addressed in their early stages. Though the responsibility does fall on the employee, it can be difficult for someone with a disability to be assertive about their needs for fear of losing their job, discrimination and/or rejection.

For some disabilities it may be helpful to have discussions about it with the staff. If the employee is interested, they can provide information to other co-workers about their condition and how it impacts them. If such disclosure is public it is imperative that the employee chooses this option, and follow up support is available. This can be a good option for the more visible disabilities or where the accommodations are apparent to everyone. In an ideal world disclosures about all disabilities would be treated with compassion. This is generally not the case, especially with mental limitations, and could become problematic for the employee in his/her relationships with others.

Making accommodations for an employee may feel burdensome. It can be difficult to schedule time to make changes in the work place and to have discussions with your employee. If the individual seems demanding or there are personality clashes, it can be challenging to sort through what is needed in the situation. An employee may not even understand clearly what they need in the work place, because the type of work and environment can be different than anything they have experienced. Often being around someone with a disability can trigger emotional reactions with co-workers and employers that are uncomfortable. The powerlessness in the situation goes against our nature to fix things, we may feel like they are getting special privileges, and we may have had negative experiences in the past that effect our current assessment. Processing through your own biases is crucial to a healthy environment.

Learning how to find your own support is vital if you find yourself reacting to the employee and if you start making decisions that go against the values and strategic plan of your work place.

Communication and support are the keys to any healthy work environment. If we have regular times to discuss issues then the remainder of the time can be focused on production and fulfilling company goals. There are many resources available to learn about the local laws, accommodations, and services for those with disabilities. Some disabilities can receive job coaching, through state or local programs and employers can receive training and guidance on particular disabilities. Being proactive will give a greater likelihood of success. However, just because one experience wasn’t successful it doesn’t mean the next one won’t be. With an open mind, you will be amazed at the lessons you will be taught, and the inspiration you gain from watching someone with significant barriers succeed in their job duties.

Thank you for considering me and others with disabilities for employment.

Disclosure at work can be a difficult decision even in the best of circumstances. Will it hurt my chances of advancement? Will it give me protection for the accommodations I need? Will it help others to know about my pain and fatigue? Though I wish that honesty really was the best policy, when it comes to disclosure privacy may be the best option.

Many questions are helpful to ask when making the initial decision. Will I be able to complete the essential functions of the job without some accommodations? What am I looking for and is disclosure the process to get me there? I consider the risk associated with sharing particular facts and feelings regarding my “disability”. How would I handle insensitive comments, silence and/or ignorance in the workplace? Am I able to receive the support that they offer me? When would be the best time to share and what specifically do I need them to know in order to succeed at my job? It can also be helpful to know a little about who you are disclosing to, as reactions are usually about their own experiences and circumstances, and less about your particular situation. The answers to these questions aren’t stagnant, they will vary depending upon my health, the duties assigned, my co-workers and other life circumstances.

Trust and effective communication are essential in the disclosure process with supervisors. If I am unable to articulate my pain and my needs, it is impossible for them to grasp its impact. Unfortunately, this isn’t always possible. When I first returned to work, I wasn’t really clear about my needs in a work environment, because it wasn’t an experience I had encountered yet in my illness. This lack of clarity, made my situation more complicated and created increased frustration. I am much more persistent when I trust someone and more willing to ask for feedback and verify the meaning of key statements. Without trust, it is difficult for me to feel safe especially when dealing with people in authority. Generally specific request are granted, where emotional support is less defined. However, emotional and practical support from a supervisor can make all the difference in the disclosure process.

The ADA provides protection for disclosures but can create fear with supervisors regarding potential law suits. I have found understanding the ADA is helpful in knowing my rights, as well as learning the language of the law. However, an argument with an employer about rights rarely results in a positive work environment. If disclosure is necessary (or apparent) it can be helpful to be clear about the specific request and why this is necessary for you to perform the essential functions of the job. The JAN Network is a helpful resource to learn more about the ADA and accommodations for specific disabilities. Being respectful, kind, clear and persistent will be aide in reducing the fears of the employer. Most requests are best done in person with a follow up e-mail, but this may not be necessary for simple request and/or if the relationship with the supervisor is strong. If an employer refuses or makes excuses it is important to keep accurate documentations in case further action is needed and/or desired.

The issues with disclosure are numerous and can’t be completely communicated in a simple blog. The most important thing about disclosure is regardless of the reaction of others at work, you have value in the workplace. Find supportive people within the work place and/or outside of the workplace to process with whether you choose to disclose or to maintain your privacy. Don’t give up. Look for the gold in your relationships, your periods of growth, moments of service, your strengths, and living out your values.